Kidney Mama

I just passed the second anniversary of donating a kidney to a former stranger, now a friend. And I will tell the story sometime about how that all came to be, but today I just wanted to write down a few things I learned.

My brain is iffy, but my body is strong. I always had this nagging fear that there was some hidden thing really wrong with my health. But I had so many tests leading up to this transplant, and I forced so many medical people, both doctors and friends, to review the tests that I know for a fact that I am very, very healthy. That is a gift and on some level, a relief.

Being different is a good thing. When it comes to schools of thought, I’m the fish swimming in the other direction a lot of the time. In the stories of other living donors, I have seen that our road less traveled is saving lives. (Is that enough cliches in one paragraph?) We are a little peculiar in that we see kidney donation as this very obvious thing. I have two; you need one or you will not live very long. Here, take one. Simple.

Set your mind on what you want. I don’t know how to describe to you how afraid I was of needles when I started the donation process. But I said to myself, “This is not about me, it is not for me. This is about something bigger, and I will get through this.” And I made it through all the blood draws and three or four IV ports without crying, fainting or whining. Much.

People want to get involved when good things happen. Friends and co-workers took care of my dogs and cats, got my car fixed while I was in the hospital, threw me a couple of parties and donated a good chunk of cash to my recipient’s medical bills. It made them happy to be part of it, and I really appreciated the help.

My aim is true. I have made some pretty radical decisions in my life. I’ve picked up and moved across the country any number of times (OK, four times). I live in a house shaped like half a grapefruit. I’ve taken some big chances on love. I’ve changed careers several times. I’ve taken in some pets that no one else would have. And I donated a kidney to a stranger. Aside from the romances, it’s all worked out pretty well, particularly the kidney donation.

I have man kidneys. Surgical teams see you as a collection of parts, and they make observations about those parts without really thinking about it. So I learned by paying attention that I have freakishly little body fat for a woman my age, and I have the largest kidneys that two leading transplant surgeons had ever seen on a healthy woman. Well, I have one and Anthony has one. His doctor occasionally still exclaims, “Where did you get this thing?!”

There is nothing better than placing your body where your spirit already dwells. I believe that people are interconnected and obligated by their coexistence on this planet to help each other. I believe that any act, however small, to make the world a better place is valuable. Putting my faith in these ideas to the test by giving a kidney to a stranger was an amazing and profound experience.

So that’s me, two years in. I’d do it again tomorrow.

I haven’t blogged here in so long, and it’s not because I have lost interest in living organ donor issues; I just need to change up the format a little to keep myself interested in writing the blog.

I’m not sure exactly what this site needs to be, but probably more observation and less traditional weblogging. Living donation is becoming more common all the time, and there are lots of great sites out there that celebrate donations as they happen.

The other thing that kept this strictly a weblog at first was that I was under contractual obligation not to tell my story because my recipient and I were in the pilot for a documentary TV series that kept almost happening but then finally didn’t. Now I’m free of that restriction against writing about my donation.

So with that, I think I shall.

My kidney sister Cara sends along the story of Brenda Bogue’s experience donating a kidney to a stranger.

I read the newspaper every day. … My journey began one day this past Summer when I came across an article about a man who lost his 16-year-old daughter tragically in a car accident. His daughter was an organ donor, and he was very inspired when he learned that her heart valves saved another person’s life. In her memory, he began to advocate for people to become organ donors.

Early on he learned of the need and opportunity to be a living kidney donor, and he did just this … which is what the article was about.

I, too, have made the decision to donate my organs when I die, but before reading the article this past Summer, I had no idea that it was possible to be a living kidney donor.  I also had no idea how many people were on the waiting list for a kidney, – 87,000 – and how many people were dying each year while waiting for one – approximately 5,000.

I was surprised to learn that a person can lead a normal life with only one kidney, and furthermore, I was encouraged to hear that the donor’s surgery is laparoscopic, which is less invasive than traditional surgery, with a much shorter recovery time.

Although there are always risks with any surgery, being a living kidney donor overall is very safe.

I am a Christian, and therefore I seek out God’s wisdom through prayer before making any big decisions.  Before I even finished reading the newspaper article, I felt God prompting me to consider being a living kidney donor.

I imagined what it would be like to have a family member whose kidneys were failing and in need of a kidney transplant, knowing that without it his/her quality of life would be greatly compromised and significantly shortened.  Undoubtedly, a few of my family members would step up to donate, but what if we learned that none of us were are a match; which unfortunately occurs about 30% of the time.  We would be disheartened; hope is lost. The average wait for a deceased donor kidney is five years.

But then our family learns of the concept of “kidney pairing,” which gives a person in need of a kidney a much better chance of receiving one, if they have a person willing to donate their kidney to another person who is a match.  We have hope again!

My decision to be a living kidney donor came after praying to God for guidance, talking with my husband Mike, and sister Stacey, putting myself “in the other person’s shoes,” and reflecting on the forty-three years of good health that God has blessed me with…for me it was a fairly easy decision.

In the subsequent weeks, I did some further research on the internet on the subject of being a living kidney donor. This included reading about the experiences of two recent donors, Cara Yesawich and Angela Stimpson. I found their blog sites to be very informative and inspiring. Another valuable site with a wealth of information is The Living Kidney Donors network.  There is a wealth of information on this site for both those needing a kidney and for living donors.  Harvey Mysel, founder of the non-profit organization, is a kidney recipient himself and I printed several articles from the site for my family to read so they could fully understand the process.

A very valuable source of information and support to me during my journey in being a living kidney donor, was the mentoring I received from Cara Yesawich.  Cara is an altruistic kidney donor who was the domino for eight people to receive a kidney in largest kidney pairing of Northwestern Hospital’s history.  She is very passionate about being a mentor for others who are on this journey, and in helping to raise the awareness of the need for living kidney donors.

She “walked me through,” each step of my journey and came to the hospital to offer her support immediately following my surgery, what a blessing she was to me!  For anyone considering being a living kidney donor, I strongly encourage you to take advantage of the “gift” of mentorship and I welcome the opportunity to share my experience with anyone.

Please feel free to e-mail me at:  brenb24@gmail.com.

My surgery was on December 30; I am an altruistic donor, and three people were able to receive a kidney in my pairing at Northwestern Hospital.  Everything went as planned; I spent one night in the hospital.  I experienced moderate pain the first several days and slept a lot.  After about a week I turned the corner and was able to return to work half days (my energy still wasn’t back 100%).

I was back to work full-time the third week and now I am about four weeks out from the surgery and feel back to normal. I plan on starting to run again in a week or two and am registered to run another marathon in September.

I received a beautiful card from the family of the gentleman who received my kidney in the kidney pairing …  part of it reads:

“Dear Brenda,

It is impossible to thank someone for a gift such as you have given to us.  Dialysis allowed my dad to live but your gift of a kidney has given him a renewed quality of life worth living, and for that we are eternally grateful….”

The sacrifice that I made in donating one of my kidneys was minimal, compared to the gift of an improved quality of  life which I was able to give to someone else.

Jackie Gorman will donate a kidney to a man she doesn’t know. Though some of us might have trouble understanding why, she knows exactly why.

Above is the lead-in to an excellent article in the L.A. Times about Jackie’s decision to give a kidney to a stranger. Why is she going to be a living kidney donor? Why not?

But her family and doctors certainly did not take it all that well. Jackie faced most of the objections living kidney donors faced, but she knew the transplant surgery was safe and that she could save a life.

Great column, especially if you are considering living kidney donation and everyone around you is considering your sanity.

Catch the antics of Ms. Angela Stimpson over at her blog, OK Solo. She became a living kidney donor last week and lived to blog. Girlfriend gave up a kidney but retained her sense of humor.

Lee Adams donated a kidney a few years ago to her brother-in-law. Since then, she’s held a country concert every year to benefit living kidney donation. This year, Lee’s hoping the event will raise $10,000.

Proceeds go to the University of Maryland Medical Clinic Living Organ Donor Clinic, which offers free testing and care for living kidney donors, among others.

The event is tomorrow night; good luck, girl.

Having just discovered The Kidney Thing, I’m going to insist that you go look. It’s a cartooned account of a woman’s journey to be a living kidney donor to her brother. Fantastic.

Thanks, Jana. You really captured it.

This just in from Robyn Wheatley, who donated a kidney to a stranger earlier this month and wrote this essay on July 23.

Yesterday I met the man who now has my left kidney. He had no idea who I was prior to our meeting yesterday, and I had no idea who he was. We were strangers. For both of us, I am confident in saying, our identities and what we looked like did not matter. But, we are no longer strangers. With tears of joy, he and I hugged and exchanged a nervous greeting and shared an appreciation for what had just happened not yet a week prior. His life has been changed in obvious ways, but this process has indeed changed my life in less obvious ways; it has made me re-evaluate the value I place on my own life and relationships.

I will be processing this for some time to come. But I’m getting ahead of myself with the story.

On Thursday, July 15, I donated one of my kidneys to a complete stranger, starting off a chain for a kidney swap. (See The Alliance for Paired Donation for more information on how altruistic donor chains work.) I had the surgery at Northwestern Memorial Hospital. Very simply, I did this because I can. The decision I made had come after a lot of research and consultation, and much time and effort.

I was inspired to start this process back in March as I read the story of another local man’s recent decision to donate a kidney to a cashier at a food store he frequented over the years. He learned of the woman’s progressively deteriorating health and was made aware of her kidney disease. She had exhausted all possibilities with family members and close friends-no one was a match. The man offered to get evaluated as a potential donor. It turns out that he matched her well, and the rest is history. The woman gets to live a longer, fuller life of many years and will no longer be subjected to the torture of dialysis. That was all I needed to hear. After doing some initial research (of which there is a plethora) I called Northwestern Memorial Hospital’s kidney transplant program. Their reputation precedes them.

I do understand and appreciate that what I have done is unusual. It is not for everyone. As I have shared this news with people I received wonderful support and encouragement; there have been a few looks of puzzlement; and, lastly, there have been many who still can’t seem to wrap their heads around why it is I would choose to donate one of my kidneys to someone whose identity is unknown to me, not a family member, not a friend, not even an acquaintance. Regardless of the response, I know that all of the comments come from a place of love and concern, and include people very dear to me.

The transplants were “successful,” and both recipients are doing well. It turns out all of us in both pairings live near and within Chicago’s city limits, and we are all in our 30s. The recipient of my kidney laughed and said that his girlfriend, who coincidentally donated her kidney to the recipient in the second pair, when it was found that she was not a match for my recipient, was certain that his donor would be a woman. Well, he said, “she was right.” As we walked out of the transplant center today I said, “Don’t be surprised if you cry more easily now; that may be my influence. I am known to be openly emotional.” He assured me he’d take good care of his new, healthy kidney, and I was certain he would – never a doubt, not really something I even pondered to be honest. If anyone would not take a healthy transplanted kidney for granted, it’s someone like these two recipients who have each spent years on dialysis not knowing when, where or if a transplant would ever be a possibility.

As I’m reflecting on the meeting with the recipient of my kidney and the woman in the second pairing I am wishing more people knew the facts about living kidney donation and how little effort was involved relative to the life-changing/life-saving that has been made possible with my left kidney. I would do this again in a heartbeat if I could. The transplant team did all of the hard work with comprehensive evaluation of myself and matching with the recipient and pairs. My hard work came immediately after the surgery, if I can even call it hard work.

If I had more kidneys to donate I would do so, it is that powerful. The woman in the second pair of the chain had just had a difficult conversation with the transplant team; she was not sure she had many options left. But, as an altruistic living donor in the equation I was able to indirectly give her back quality and quantify to her life; it has given her back hope and future possibilities. What a small price I paid. My one-pound kidney represents so much more than just an organ and returned functionality to another; it is a gift that my body was able to provide-it is life. And, the gift is not just from me to the then-stranger in need, it is to me as well. It’s reaffirming, makes me want to appreciate my life and everyone I have in it with me, something that’s not come so easily in the recent past.

Words seem inadequate to describe the experience. Please feel free to contact me with any questions or if you are looking to converse with someone who has been through the process: robynwheatley@yahoo.com

Molly saw Alex from time to time at a 12-step meeting, and when she heard from someone else that he needed a kidney, she volunteered to get tested. Writes columnist Geoff Calkins:

This story is about one person helping another person. Because — how did she put it? — she thought it was something she was supposed to do.

What a concept, eh? One person is supposed to help another person? For no reason other than their shared humanity?

No one jumped onto Molly’s bandwagon to offer support, either – not her parents, not the hospital, not Alex. Oh, and not her friends.

“I had one friend I’m close to hang up on me,” Molly said. “She said, ‘Molly, we talk all the time, and you’ve never even mentioned this person. I’m sorry, but that’s just weird.’  … [The hospital] interviewed me like the CIA,” Molly said. “They had a social worker interview me, a chaplain interview me, two doctors interview me and they all asked similar questions. ‘Are you doing this for money? Have you been forced?’ One of them insinuated that I might be doing it for inappropriate reasons. I thought, ‘Does she really think I’m trying to woo him by giving him my kidney?’ “

That would be sexy, yeah. But Molly persisted through, what is unfortunately pretty typical treatment when you’re donating to someone you barely know.

In the end, the transplant was a big success. Molly muscled through her recovery, and she and Alex have become good friends.

About the only thing that makes Molly uncomfortable now is the attention. She didn’t do it for the compliments. She did it because she thought she was supposed to, because she saw an opportunity to help.

“I just wanted to do something nice,” she said. “It’s not as complicated as people think.”

Lots to read in this kidney transplant tale. Thanks to Geoff Calkins for bringing it to light.

Congratulations to the lovely and bold Lea Hanan of the Seattle area, who is so pleased to be able to help her father by giving him a kidney right around Father’s Day. Right after she finishes up schoolteaching for the year and throwing her son the best bar mitzvah party ever. Good grief, woman.

Surgery is currently set for June 28. Lea says:

“What an honor to lengthen the life of the man that enriches my life every single day!”

You go, honey.